Spaces and Systems of Care: Living with HIV in Urban South Africa

HIV is a key health challenge across South Africa, and adolescents living in urban settings with HIV appear to be a particularly vulnerable group. Prioritising and addressing their mental health and wellbeing is a key area in need of address. To understand the systems and spaces of care for adolescents with HIV, Stema partnered with the SHM Foundation. In 2013 the SHM Foundation developed the Khuluma model as a digital psychosocial support intervention consisting of closed peer-to-peer messaging services for adolescents with HIV in Pretoria and Cape Town.

Following the success of the intervention, Stema explored how digital spaces of care complement the physical spaces that adolescents rely on to look after their health. This aimed to uncover a network of people, places and objects in order to address some of the social barriers and stigmas to care. Such exploration is vital for effective care for a complex, long term condition such as HIV. 

Stema utilised a mixed-methods research approach, consisting of participatory design, spatial analysis and qualitative synthesis to develop an understanding of the caring environment for the Khuluma project. Through participatory activities with adolescent mentors in the Khuluma project, Stema was able to understand adolescents' perceptions of their environment and uncover the networks and interactions of support, places, spaces and objects relied on for care, wellbeing, and happiness. Through mapping the interactions and experiences of adolescents, more holistic ideas about adolescent lives, care and the places relied on for happiness were analysed to understand how the Khuluma interventions fit within a broader care environment.

The research undertaken by Stema was able to contribute to the continued strengthening of the Khuluma project. This highlighted Khuluma as building into a system of care that goes beyond a platform of text messages - it is forming relationships, encouraging learning and encouraging health practices.